One story, one action, one change at a time

Posted November 25, 2020

Marina takes a selfie wearing a Society tshirt in black with a white zebra. Grass and trees form a backdrop.

I come to you today as a patient expert, disability justice activist, and advocate.  

Advocacy and activism is work that many people find themselves doing as a direct result of experiences they’ve had in their lives or been part of through the lives of those close to them. While not always the case, I have found this to be quite true for many of us in the disability, chronic illness, and rare disease communities. Why? The simplest answer is that is necessary. If we don’t do it, who will? If someone else does do it and we are not part of the process, what results will it yield?

There are more than 1 billion people worldwide living with a disability, according to the World Health Organization. Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated co-morbidities make up just a fraction of that population, but we are present and growing as diagnostic tools and healthcare education improves and our voices grow stronger. 

This year has been like no other. I’ve been in my home since March like many of you, viewing the world through a computer screen and breathing in the fresh air of nature when the opportunity presents. It can be hard to feel like an advocate or activist when you cannot be physically present at an event, but this pandemic is not the first time many of us are having that experience. Health sometimes dictates when and where we go as does accessibility. Finally, the world is seeing things from our perspective, if only just a little. 

There is much discussion, especially in the disability communities, surrounding the right ways to advocate and be an activist. For some of us being an advocate or activist means creating a voice on social media through words, artwork, videos; for others, it means volunteering time or donating funds to support organizations and disability-led movements; then there those whose careers are dedicated to and driven by this work. One is not better than the other. They are all equally essential. 

My work this year looked much different than it otherwise would have due to the ongoing global health crisis and my own personal health circumstances. Overall, I have managed to stay more engaged and connected to my advocacy and activism goals as a result of the increased accessibility brought about by virtual events, meetings, panels, training sessions, etc. I’ll share a few highlights from my year participating in various work with The Ehlers-Danlos Society in hope that it will energize and uplift you to find your community and your voice.

I spent seven weeks with some amazing zebras completing The Ehlers-Danlos Society’s Advocacy ECHO program. Working in this collaborative “all teach, all learn” environment helped me develop strategies and synthesize new ideas for how to move forward in a field where most of us have to carve out our own paths. 

Participating in The Society’s EDS and HSD May Awareness Month “Acts of Awareness Challenge” was unexpectedly rewarding. While the photo-a-day challenge may feel like a small action, I can attest that it has a purpose if you put your heart into it. I was shocked by the number of people who engaged, asked questions, and reflected; those who finally had an appreciation for my lived experiences rather than unwelcome pity.

The 2020 Virtual Summer Conference brought an opportunity for me to speak about my diagnostic journey and my life as a disabled queer person. I watched as five minutes of my life’s story was shared all over the world and comments poured in from those with whom my words resonated. My story is my own, but it echoes so many others.

I am currently sitting on the Breaking Down Barriers Coalition – a more recent initiative that The Ehlers-Danlos Society has implemented to address the barriers in access to care that many people with disabilities, chronic illnesses, rare diseases, and more specifically EDS and HSD face. These barriers exist because of ableism and inequities including race, gender, wealth, and geography – amplifying the voices of those most affected by such barriers is our way forward. 

We certainly don’t owe anyone our personal information and stories. I choose, at times, to share information about my health, but prefer to speak through the lens of my communities as a whole rather than focus exclusively on my own journey. With that being said, the value in my story – in our stories – becomes ever more apparent each and every time I put a piece of my journey out into the world. Advocacy and activism is an integral part of the path forward for the EDS/HSD community – for the disability, chronic illness, and rare disease communities as a whole.  The opportunity to engage through organizations like The Ehlers-Danlos Society is an important step for progress and one that we need to achieve together – one story, one action, one change at a time. 

Tags: , , ,

Categorized in: